CONTACTS 

SUBJECTS
2nd Opinion Verify Scope of Problem and Treatment Planning Tumor Boa
2nd Opinion Requested from UCSF, Stanford, UC Davis Cancer Centers
UCSF Meeting Doctor Benz 2nd Opinion

1305 -
1305 -    ..
1306 - Summary/Objective
1307 -
130701 - Follow up ref SDS 29 0000, ref SDS 27 0000.
130702 -
130703 - The doctor made a good review of pathology and test documents.
130704 - ref SDS 0 EN63  He concurs with Kaiser's analysis that recurrence in
130705 - the neck under all of patient risk factors indicate metastic cancer.
130706 - The doctor feels that surgery is not an option, and there is no
130707 - prospect for ending treatments. ref SDS 0 EO3Y  All of the films and
130708 - slides were returned to the patient. The doctor plans to dictate a
130709 - report. ref SDS 0 O64L
130711 -  ..
130712 - Mil submitted email to Sheridan asking that she pass along thanks to
130713 - the doctor for expedited review on short notice.  Thanked Sheridan for
130714 - her efforts as well.
130715 -
130716 -     [On 041018 follow up letter submitting the record. ref SDS 31 0001
130718 -      ..
130719 -     [On 041117 received 2nd opinion report from Doctor Benz at UCSF
130720 -     cancer center. ref SDS 34 6L9O
130721 -
130722 -
130723 -
130725 -  ..
1308 -
1309 -
1310 - Background
1311 -
131101 - 2nd Opinion Requested on IBC Distant Metastasis Surgery Avastin Trial
131102 -
131103 - Follow up ref SDS 29 0184.
131104 -
131105 -        Medical Records delivered.......... 041015, ref SDS 29 0184
131106 -        Patient Information submitted...... 011012, ref SDS 25 G63W
131107 -        Issues on 2nd Opinion submitted.... 011002, ref SDS 20 K138
131108 -        Case studies IBC................... 011002, ref SDS 20 Y29R
131110 -  ..
131111 - Current Condition....
131112 -
131113 -        CA 15-3 - 39 lowest in 3 years..... 041014, ref SDS 28 2N5J
131114 -        CT test no evidence cancer......... 041005, ref SDS 22 NL4N
131115 -        Bone scan test no evidence cancer.. 040713, ref SDS 17 L34N
131117 -  ..
131118 - Prior to meeting with Doctor Benz, we asked the receptionist about
131119 - visiting with Sheridan Tinker to verify Doctor Benz was able to access
131120 - the case studies, planned when we visited last Friday, 041015, to
131121 - deliver the medical records. ref SDS 29 NW58  The receptionist said
131122 - that Sheridan did not come into the office today, which conflicted
131123 - with Sheridan's letter on 041012 advising that she would meet with us
131124 - today. ref SDS 25 N25Y
131126 -  ..
131127 - The receptionist used Millie's credit card to process payment for the
131128 - visit today in the amount of $600, as agreed during the call with
131129 - Sheri on 041012.
131130 -
131131 -
131132 -
131133 -
131135 -  ..
1312 -
1313 -
1314 - 1000
1315 -
131501 - The doctor came into the examination and appoligized for being late
131502 - for the 0930 meeting, explaining he was reviewing the extensive
131503 - medical record received from Kaiser, and delivered to UCSF this past
131504 - Friday. ref SDS 29 0184
131505 -
131506 -
131507 -
131508 -
1316 -

SUBJECTS
CA 15-3 Not Used UCSF Cancer Center Cancer Marker Assess Response Tr

2403 -
240401 -  ..
240402 - 2nd Opinion Metastasis, Surgery, Ending Treatment
240403 - CA 15-3 Cancer Marker Documented Requested Verify Accuracy Conversation
240404 -
240405 - The doctor summarized the purpose of the meeting based on Millie's
240406 - letter to UCSF dated 041002, which had been printed and was fastened
240407 - into the patient file folder used by the doctor throughout the meeting
240408 - today.  The doctor read from the letter...
240409 -
240410 -        1.  I need to make a decision on whether to continue, stop and
240411 -            have a mastectomy, or simply to stop treatment altogether
240412 -            on the grounds that diagnostics using CT scans have not
240413 -            identified distant metastasis, and show that all tumors
240414 -            have been significantly reduced or been eliminated.  A
240415 -            complicating factor seems to be that if I opt for surgery,
240416 -            then I can no longer get treatment with Avastin, even if
240417 -            the evidence shows the treatment is effective.  So, there
240418 -            is a dilemma, and I need guidance on resolving it.
240419 -            ref SDS 20 Y25R
240421 -             ..
240422 -        2.  I would like a physician to review the case history to see
240423 -            if anything has been overlooked that might indicate distant
240424 -            metastasis.  Kaiser had the case reviewed by a "Tumor
240425 -            Board" in April.  Their report did not seem comprehensive
240426 -            nor offer helpful guidance.  The Tumor Board made no
240427 -            finding on distant metastasis; the attending physician
240428 -            feels that lumps in the neck, which are symptoms of IBC,
240429 -            establish metastasis.  I want a 2nd opinion. ref SDS 20 Y27U
240431 -  ..
240432 - UCSF practice verifying the purpose of meeting by citing the patient's
240433 - letter requesting 2nd opinion consultation, ref SDS 0 LX3U, fits the
240434 - model of leadership required for good management by being prepared to
240435 - work productively, presented by Covey, reviewed on 921205. ref SDS 1
240436 - 5940  On 960205 study reported that people waste 70% of the day in
240437 - unproductive meetings because the purpose of meeting is unclear, and
240438 - nobody invests time to be prepared to work effectively. ref SDS 3
240439 - 5902
240441 -  ..
240442 - Millie noted today that the most recent CA 15-3 cancer marker has
240443 - dropped to 39, which is within the normal range, reported on 041007,
240444 - ref SDS 24 2N5J, for the first time since March of 2002.
240446 -  ..
240447 - The doctor said that he reviewed Kaiser's report for the blood test on
240448 - 041007 and it shows results for CA 15-3 are "in lab."  He asked if
240449 - Kaiser has published an updated version of the report showing results
240450 - for CA 15-3?  Doctor Benz explained that UCSF best practices for
240451 - quality control of communications strives to rely on documentation
240452 - from original sources to authenticate accuracy of conversation in the
240453 - meeting today.  The gist of story on Millie's condition can be derived
240454 - from discussion during the meeting, but issuing a 2nd opinon requires
240455 - authority on file to verify accuracy.
240456 -
240457 -        [On 060815 Doctor explained that getting the gist of the story
240458 -        is good enough for another 2nd opinion. ref SDS 48 YK6N
240460 -  ..
240461 - UCSF practice relying on documentation to authenticate accuracy of
240462 - conversation aligns with management standards for traceability to
240463 - original sources, reviewed on 950721. ref SDS 2 1740  This seems to
240464 - conflict with Kaiser's report on 040812 that accuracy of medical
240465 - practice is less precise than engineering, and therefore errors and
240466 - omissions in tests are not important to diagnosis and treatment.
240467 - ref SDS 18 LQ5L
240469 -         ..
240470 -        [On 041019 Doctor Guardino demonstrated importance of accuracy
240471 -        in health care by requiring an aide to check the record for
240472 -        verification on the date of a pathology report on IBC, rather
240473 -        than rely on assurances in conversation. ref SDS 32 BV92
240475 -         ..
240476 -        [On 041230 primary care physician asked patient for reasons
240477 -        chemotherapy regimine was changed to another drug, illustrating
240478 -        importance of timely, accurate records. ref SDS 39 XQ84
240480 -  ..
240481 - The doctor asked that Millie notify Kaiser to submit an updated report
240482 - to UCSF for the blood test on 041007 showing CA 15-3 39.
240484 -  ..
240485 - Millie advised that this has been done.
240487 -  ..
240488 - Document review on 041014 to prepare for the meeting today showed that
240489 - the version of the report for the blood test on 041007 did not have
240490 - results from the lab on CA 15-3. ref SDS 27 SR7I  The nurse in the
240491 - Infusion Clinic at Kaiser reported later in the day that CA 15-3 had
240492 - dropped to 39.  Since this is a dramatic change in the cancer marker,
240493 - reaching normal for the first time in over a year, Millie asked the
240494 - nurse to print the test report on 041007 that corrects the omission in
240495 - the documents Kaiser assembled for 2nd opinion review. ref SDS 28 2N5J
240496 -
240498 -  ..
240499 - CA 15-3 Not Relied Upon by UCSF for Patient Status
240500 -
240501 - Millie handed Kaiser's latest report showing CA 15-3 39 to Doctor
240502 - Benz.
240504 -  ..
240505 - The doctor looked at the report showing CA 15-3 has dropped to normal
240506 - for the first time in 3 years.  Doctor Benz commented that UCSF does
240507 - not rely on CA 15-3, and so the report is not significant for analysis
240508 - of Millie's condition.  The doctor indicated that dramatic change in
240509 - CA 15-3 can signal progression of disease or response to treatment;
240510 - however, patients can have serious cancer disease while CA 15-3
240511 - remains low for a long time, and as a result, UCSF does not use CA
240512 - 15-3 to evaluate patient status.  This aligns with primary care
240513 - physician on 030508 advising that 25% rise in CA 15-3 does not signal
240514 - concern about recurrent disease, on grounds representing that ASCO
240515 - does not recommend CA 15-3 to diagnose breast cancer. ref SDS 8 M28G
240517 -         ..
240518 -        [On 041019 CA 15-3 not used for cancer marker at Stanford
240519 -        Cancer Center. ref SDS 32 Y15N
240521 -         ..
240522 -        [On 070328 cancer biomarkers, like CA 15-3, technology rapidly
240523 -        advancing for diagnosis and treatment. ref SDS 51 0001
240525 -         ..
240526 -        [On 070406 UCSF submits results blood tests showing CA 15-3 has
240527 -        dropped to near normal range with cetuximab treatments provided
240528 -        by UCSF within a clinical study. ref SDS 52 EQ6I
240529 -
240531 -  ..
240532 - On 030220 research indicates ASCO guidance indicates CA 15-3 helps
240533 - identify recurrent disease. ref SDS 7 SZ4G  The primary care
240534 - physician in the Oncology Department at Kaiser in Walnut Creek
240535 - commented on 030508 that steady rise of CA 15-3 did not support
240536 - patient concerns about relapse.  ASCO guidance was cited which seems
240537 - to recommend CA 15-3 to assess relapse. ref SDS 8 M28G  On 040517 rise
240538 - of CA 15-3 was discussed in a document submitted on the Tumor Board
240539 - "minutes" as indicating failed treatment in this case. ref SDS 14 4R59
240540 -
240541 -
240542 -
240543 -
240544 -
240545 -
240546 -
2406 -

SUBJECTS
Doctor Notes Medical Chart Typically Sparse Illegible Not Effective
Medical Chart Illegible Sparse Handwritten Notes Cryptic Unreadable
2nd Opinion Medical Records Review Organize to Facilitate 2nd Opinio

3505 -
350601 -  ..
350602 - Patient History Not Available on UCSF Med School Computer
350603 - Case Studies for Chronology of Patient History Not Reviewed
350604 -
350605 - The doctor did an excellent job understanding pathology, diagnosis,
350606 - and treatment history based on documents from Kaiser.  He explained
350607 - that doctor's progress notes in the medical chart reporting patient
350608 - history on examinations, and work up for diagnosis and treatment plans
350609 - are sparce, illegible, and disconnected from chronology and context,
350610 - and so are typically not reviewed to prepare 2nd opinions, becasue it
350611 - takes too much time to figure out what was intended, reflecting review
350612 - on 041014. ref SDS 27 W78K  This conflicts with Kaiser's Healthwise
350613 - Handbook calling for review of patient history in the Medical Chart to
350614 - diagnose and prescribe treatment, reported on 990625. ref SDS 5 TD5S
350616 -  ..
350617 - Millie's primary care physician citied similar problems on 040227 to
350618 - explain difficulty finding patient history on medical tests.
350619 - ref SDS 11 8874
350620 -
350621 -     [On 070221 computers at the VA provide a "miracle" giving doctor's
350622 -     instant access to legible patient history with a few clicks.
350623 -     ref SDS 50 HH5N
350625 -  ..
350626 - Previously, on 990912 national reporting cited illegible handwritting,
350627 - ref SDS 6 0900, causes failed communication which increases medical
350628 - mistakes. ref SDS 6 0960  On 041013 Kaiser was credited by the
350629 - Enterprise Architect at Boeing for leading in applying Knowledge
350630 - Management to improve medical practice. ref SDS 26 W14V
350631 -
350632 -     [On 041019 Doctor Guardino demonstrated importance of accuracy in
350633 -     health care by requiring an aide to check the record for
350634 -     verification on the date of a pathology report on IBC, rather than
350635 -     rely on assurances in conversation. ref SDS 32 BV92
350637 -      ..
350638 -     [On 041130 written work plan submitted by Kaiser illigible,
350639 -     conflicts with Breast Cancer Treatment Guidelines for Patients on
350640 -     page 52. ref SDS 35 9V71
350642 -      ..
350643 -     [On 041230 primary care physician asked patient for reasons
350644 -     chemotherapy regimine was changed to another drug, illustrating
350645 -     importance of timely, accurate records in the patient medical
350646 -     chart. ref SDS 39 XQ84
350648 -  ..
350649 - Doctor Benz indicated that Millie's work on 041014 to prepare for the
350650 - meeting today by placing tabs in Kaiser's documentation, ref SDS 27
350651 - VA9J, was very helpful for saving time finding relevant reports on
350652 - imaging and biopsy tests.  The doctor used the reports tabbed by
350653 - Millie on 041014 to construct a rough time line on patient case
350654 - history.
350656 -  ..
350657 - The doctor advised he needs the chronology of patient history on
350658 - discovery of IBC, and details about the onset of original disease.  He
350659 - explained that the chronology submitted to UCSF on 041002, ref SDS 20
350660 - K138, could not be accessed from his computer here at the UCSF Med
350661 - School, nor at his regular office.  As a result, he never saw patient
350662 - history, despite coordination by Sheridan to facilitate review, per
350663 - above, ref SDS 0 LW5V, and despite the patient driving 60 miles
350664 - several days ago to provide an orientation to facilitate the doctor's
350665 - access to the record for working intelligently, reported on 041016,
350666 - ref SDS 29 NW58, and frustrating planning on 971021. ref SDS 4 3636
350667 -
350668 -        [On 050212 Doctor Kim could not find details of patient history
350669 -        in the medical chart stored by Kaiser's computer knowledge base
350670 -        in time for emergency treatment; relied on personal memory of
350671 -        medicated patient traumatized by fairly dangerous condition for
350672 -        relevant facts over the past three (3) years. ref SDS 41 VC8H
350674 -         ..
350675 -        [On 050414 John Maloney cites UCSF for using Knowledge
350676 -        Management in medical practice, ref SDS 43 LX7F, with
350677 -        "earth-shattering achievements" over the past 10 years.
350678 -        ref SDS 43 JY5Y
350680 -         ..
350681 -        [On 060809 UCSF willing to try again to use SDS technology for
350682 -        saving time accessing medical records on patient history.
350683 -        ref SDS 47 I73H
350685 -  ..
350686 - We offered to power up the notebook computer to show the chronology
350687 - during the meeting, but the doctor was late for another meeting, and
350688 - didn't have time.  Since the doctor had other commitments, we did not
350689 - take time during the meeting to resolve access problems with UCSF's
350690 - technical staff, so that the doctor could review case studies on the
350691 - Internet that show the chronology of patient history.  On 041004 the
350692 - new patient coordinator, Sheridan, recommended that patients visit the
350693 - UCSF web site for information on doctors and services. ref SDS 21 WO4R
350694 - This was restated last week on 041212. ref SDS 25 MQ4J  Doctors should
350695 - have equal access to websites for patient information, as planned by
350696 - Sheriden in her letter on 041212. ref SDS 25 3Y5L
350698 -  ..
350699 - The doctor spent an hour so asking a great many detailed questions to
350700 - manually construct a chronology of patient history.  He asked Millie
350701 - when symptoms began many years ago, the date of the first operation,
350702 - and the date of re-excission for clear margins, dates of chemotherapy,
350703 - and changes in the protocol from AC to Taxotere, when radiation was
350704 - performed, when the red rash first appeared, how prominent symptoms
350705 - seemed at the time, how severe, and how long breast coloration lasted,
350706 - when axillary lumps appeared, what image testing showed, and how CA
350707 - 15-3 cancer marker varied with discovery of IBC?  The doctor made
350708 - extensive notations to his case sheet, based on momentary
350709 - recollections by the patient of events in 2002 and 2003.  He drew
350710 - arrows to connect disparate markings in his notes; he crossed some
350711 - things out, and added notations to reflect evolving understanding from
350712 - discussion with Millie clarifying points about chronology.
350714 -  ..
350715 - At one point, while questioning Millie, and thumbing through Kaiser's
350716 - many documents, they all slipped from his lap and scattered in a
350717 - jumble on the floor.  All three (3) of us bent over to pick up the
350718 - papers, and put them back in order.  Took about 5 minutes.  The doctor
350719 - apologized and commented that Millie has a very complex medical
350720 - history that takes time and concentration to absorbe and connect
350721 - related parts of many documents for comprehensive understanding.
350722 -
350723 -     [On 041117 Doctor's 2nd opinion error in chronology saying
350724 -     re-excission was on 040327. ref SDS 34 OS8Y
350726 -      ..
350727 -     [On 041117 Doctor's 2nd opinion shows complexity of patient
350728 -     history. ref SDS 34 OS9R
350730 -      ..
350731 -     [On 060815 Doctor explained that getting the gist of the story is
350732 -     good enough for another 2nd opinion. ref SDS 48 YK6N
350734 -      ..
350735 -     [On 071006 Paula in Kaiser's MCRC business unit discovered that
350736 -     Knowledge Management practices using SDS records online
350737 -     expedites handling documents and facilitates understanding
350738 -     complex issues. ref SDS 54 EX8K
350740 -  ..
350741 - Doctor Benz commented that secondary IBC is a rare disease.  Symptoms
350742 - change over time, and this complicates diagnosis.  He asked how long
350743 - ago the redness in the left breast was least severe?
350744 -
350745 -     [On 061020 primary care physician feels patient profile has too
350746 -     many issues for a 5-year medical case of secondary inflammatory
350747 -     breast cancer (IBC), cellulitus, lymphedema, pulmonary embolism,
350748 -     broken finger. ref SDS 49 MO4K
350750 -  ..
350751 - Millie recalled the most severe condition was in March, April, and
350752 - May.  Since treatment started with Taxol and Avastin on 040420, there
350753 - has been improvement.  Today the condition is better than at any time
350754 - since IBC disease was diagnosed on 040614, and observed this year in
350755 - March, reported on 040318. ref SDS 13 IM6J
350756 -
350757 -
350759 -  ..
350760 - IBC Status Not Determined from Clinical Examination
350761 -
350762 - The doctor examined Millie, including her head.
350764 -  ..
350765 - The doctor indicated he cannot determine from clinical examination if
350766 - the IBC disease is breaking up in the left breast, because he has only
350767 - a single point of reference.  He would need several visits to offer an
350768 - opinion of the IBC condition in the left breast.
350770 -  ..
350771 - Doctor Benz described the condition of the left breast observed during
350772 - the examination as showing slight coloration compared to the right
350773 - breast that is not infected.
350774 -
350775 -     [On 041019 Doctor Guardino at Stanford Medical Center described
350776 -     slight redness in left breast compared to right breast.
350777 -     ref SDS 32 TX93
350779 -      ..
350780 -     [On 041117 2nd opinion report from Doctor Benz at UCSF cancer
350781 -     center confirms findings that left breast shows "areas of" of peau
350782 -     d'orange..." ref SDS 34 OO8O
350783 -
350784 -
350786 -  ..
350787 - Delayed Treatment IBC Does Not Impact Health Recovery in this Case
350788 -
350789 - The doctor seemed to say that delayed treatment from 021209 until
350790 - 040420 impacts patient survival and health.
350792 -  ..
350793 - There was not enough time today for Doctor Benz to clarify when
350794 - delayed treatment impacts the patient.  For example, the lump under
350795 - the arm got progressively worse for several years.  Redness of the
350796 - left breast got worse over 14 months.  When lumps occurred in the
350797 - neck, there was a report on 040318 that treatment was needed
350798 - immediately. ref SDS 13 8R6M  Why is treatment needed immediately for
350799 - one symptom of IBC, lumps in the neck, but not for two other symptoms,
350800 - redness of left breast, and lumps under the left arm, especially
350801 - following a year of treatment for these specific areas?  Why a biopsy
350802 - and immediate treatment for lumps in the neck, but no biopsy for lumps
350803 - under the arm, and no biopsy for worsening redness of the breast?  Is
350804 - this supported by the literature?
350805 -
350806 -
350807 -
350808 -
3509 -

SUBJECTS
Surgery Not Effective for Millie's Pataient Profile to Treat IBC Doc

3803 -
380401 -  ..
380402 - PET Test Not Recommended to Determine Scope of Problem
380403 - Surgery Not Needed for IBC when Metastatic Cancer Diagnosed
380404 - Out of Capsule Lymph Nodes Recurrance in Neck Drive Diagnosis
380405 - Metastatic Cancer Stage III Requires Continued Chemotheapy No Surgery
380406 -
380407 - The doctor indicated that cancerous lymph nodes in the neck, the onset
380408 - of IBC, and earlier the out of capsule finding in the pathology on
380409 - lymph nodes under the arm, reported 020312, all indicate that Millie
380410 - has stage III metastatic cancer.  The doctor also mentioned her2/neu,
380411 - and estrogen negative are further signs of metastasis.
380412 -
380413 -     [On 041117 2nd opinion received from Doctor Benz does not mention
380414 -     stage III cancer. ref SDS 34 B48N
380416 -  ..
380417 - The doctor commented that at one time standard treatment for IBC was
380418 - chemotherapy, surgery, radiation and more chemotherapy, as shown in
380419 - research reported on 040517. ref SDS 14 JK8L  He further indicated
380420 - that surgery is not an effective option for Millie's patient profile.
380421 - No criteria was presented to support this opinion, which, however,
380422 - seems consistant with comment by the primary care physician in the
380423 - Oncology Department during a meeting at Kaiser on 040812. ref SDS 18
380424 - SE61 Doctor Benz further indicated there is no path nor realistic
380425 - prospect for leaving treatment.  He said unfortunately there is no
380426 - cure for, nor recovery from. metastic cancer that continually mutates
380427 - to resist treatment, as related by the priary care physician at Kaiser
380428 - on 030606. ref SDS 9 N27L  Doctor Benz further said that Millie's
380429 - cancer will therefore likely relapse, also, discussed previously at
380430 - Kaiser on 030606. ref SDS 9 NE4G
380431 -
380432 -     [On 041019 Doctor Guardino indicated surgery may be effective
380433 -     after progress recovering from IBC occurs. ref SDS 32 TX96
380435 -      ..
380436 -     [On 041117 2nd opinion from Doctor Benz confirms understanding of
380437 -     recommending against a surgical solution in Millie's case, and
380438 -     does not offer a basis for this opinion. ref SDS 34 OU5P
380440 -      ..
380441 -     [On 041209 2nd opinion received from Stanford says that surgery
380442 -     may be possible after regression of inflammatory breast condition
380443 -     and does not describe criteria for determining sufficient
380444 -     regression. ref SDS 37 SN97
380446 -      ..
380447 -     [On 041210 doctor proposes surgery to treat IBC; case study
380448 -     reviews history considering surgery for Millie. ref SDS 38 ZV5J
380450 -      ..
380451 -     [On 050324 research yielded a professional comment that IBC is not
380452 -     always inoperable, which seems to present a bias against surgery
380453 -     that may align with Doctor Benz at UCSF. ref SDS 42 TN76
380455 -      ..
380456 -     [On 050324 research indicates metastatic cancer involving regional
380457 -     lymph nodes, diagnosed on 040318, ref SDS 13 8R6M, may be operable
380458 -     to reduce chances of relapse, which is different from "distant
380459 -     metastasis," that surgery cannot cure, but may play a palliative
380460 -     role, ref SDS 42 O84N, further explained from research on 050712.
380461 -     ref SDS 44 B65G
380463 -      ..
380464 -     [On 050712 research indicates surgery can be a treatment option
380465 -     for stage III cancer, and is generally not attempted for stage IV
380466 -     cancer patients, who instead receive palliative treatment.
380467 -     ref SDS 44 B65G
380469 -  ..
380470 - This aligns with an article last year received on 031010 explaining
380471 - that 50% of breast cancer patients relapse within two (2) years.
380472 - ref SDS 10 IM6N
380473 -
380474 -     [On 041019 Doctor Guardino at Stanford cited similar perspective.
380475 -     ref SDS 32 TX9P
380477 -      ..
380478 -     [On 041117 UCSF 2nd opinion discusses relapse for metastatic
380479 -     cancer. ref SDS 34 OU5V
380481 -  ..
380482 - The doctor asked if PET scans have been done?
380484 -  ..
380485 - Millie related there have been two PET scans, and these were submitted
380486 - to UCSF on 041015.  There was discussion about advantage of having
380487 - another PET scan to understand the scope of the problem?
380489 -  ..
380490 - The doctor indicated that testing for cancer with PET technology was
380491 - important in some situations, and noted that in Millie's case, when
380492 - the patient experiences physical symptoms, this is a good time to
380493 - consider treatment, rather that try PET scans, based on his theory
380494 - that metastatic cancer has occurred, and treatment must thereafter be
380495 - continuous.
380497 -  ..
380498 - The doctor related that about 10 years ago Millie might have been
380499 - treated with bone marrow transplants, but this has not proven
380500 - effective, and nothing else has yet been developed to recover from
380501 - metastatic disease.
380503 -  ..
380504 - The doctor seemed to further indicate that the original out of
380505 - capsule condition established metastatic disease, and that IBC was
380506 - only one manifestation.  If IBC had not occurred, then cancer would
380507 - have emerged elsewhere under Doctor Benz's theory and experience.
380508 -
380509 -
380511 -  ..
380512 - Patient Strong Response to Treatment Fortunate
380513 - Continue Treatment and Switch Promptly When Disease Progresses
380514 - UCSF Sponsors New Drug Trials May Help Millie When Cancer Progresses
380515 -
380516 - The doctor noted that medical records show Millie has been fortunate
380517 - by responding favorably to the current treatment, which does not often
380518 - occur for patients with her condition, and that she should therefore
380519 - remain on the Avastin drug trial until there is evidence of greater
380520 - harm than benefit, either progression of disease, or when side effects
380521 - become intollerable.  The doctor recommended that treatment should be
380522 - continuous while symptoms of cancer are still present.  He will
380523 - recommend in his 2nd opinion report other chemotherapies, including
380524 - possible new drug trials sponsored by UCSF to maintain effectiveness
380525 - of continuous treatment for IBC.
380526 -
380527 -     [On 041019 Doctor Guardino at Stanford recommends continuing
380528 -     Avastin trial protocol. ref SDS 32 HX5H
380530 -      ..
380531 -     [On 041104 Kaiser reports dramatic improvement patient CA 15-3
380532 -     cancer marker drops to normal for 1st time in 2 years, ref SDS 33
380533 -     GJ5M; CT test shows no evidence of cancer pathology, ref SDS 33
380534 -     Q49F; Kaiser ends treatment of IBC on Taxol Avastin trial due to
380535 -     discovery of pulmonary emboli in a CT test, ref SDS 33 N438; plans
380536 -     switch to new treatment for IBC as soon as possible. ref SDS 33
380537 -     WT60
380539 -      ..
380540 -     [On 041117 received 2nd opinion report from Doctor Benz at UCSF
380541 -     and recommending continuing with the Avastin trial, ref SDS 34
380542 -     OU4U, and further suggesting follow on treatment with
380543 -     capecitabine, another form of liposomal anthracycline known as
380544 -     Doxil, or combinations in couplets involving such agents as
380545 -     Gemzar. ref SDS 34 OU5V
380547 -      ..
380548 -     [On 041117 UCSF 2nd opinion Doctor Benz says to contact colleague,
380549 -     Doctor Rugo, on participating in new UCSF drug trials for breast
380550 -     cancer. ref SDS 34 OV3T
380552 -      ..
380553 -     [On 041130 primary care physician recommends continuous treatment
380554 -     for IBC, after discovery that patient must end treatment on
380555 -     Avastin trial due to side effects of pulmonary emboli. ref SDS 36
380556 -     Y66F
380558 -  ..
380559 - The doctor noted that most likely, cancer will return, but in the
380560 - meantime getting weekly treatments does not present a significant
380561 - impairment to daily life.  He asked how treatments are being tolerated
380562 - in the form of 40%, 60%, 90% of normal activity?
380564 -  ..
380565 - Millie offered that the effect of treatments at this time is about 70%
380566 - of normal activity.  An example is that walking around Lafayette
380567 - reservoir 3 - 5 times a week, has been cut back to about once every
380568 - few months, since treatments began in April.  On the other hand, she
380569 - still goes to exercise class about 3 times a week, rather than 5 - 6
380570 - times prior to treatments beginning in April.
380571 -
380572 -
380574 -  ..
380575 - Tired Cough Breathing Difficult Could Signal Cancer in Lungs
380576 - Shortness of Breath Fatigue Cough Clearing Throat May be Lung Cancer
380577 - Lung Cancer May Explain Symptoms Fatigue Shortness of Breath Cough
380578 -
380579 - Millie asked about persistent fatigue, clearing of throat, cough,
380580 - heavy chest, and shortness of breath, for example when walking up
380581 - stairs at home.  This was first reported to Kaiser on 040517,
380582 - ref SDS 14 RZ4I, and has become progressively worse, reported a few
380583 - weeks ago on 041005. ref SDS 22 RZ4I  On 040812 Kaiser reviewed
380584 - correlations with pulmonary emboli associated with the Taxol/Avastin
380585 - drug trial. ref SDS 18 MG4G  Medication was prescribed for a sore
380586 - throat from coughing, but was not effective.  Primary care physician
380587 - prescribed an inhaler to relieve shortness of breath.  This has
380588 - worked, but Millie had to stop using it because the inhaler made her
380589 - unable to talk.
380591 -  ..
380592 - Doctor Benz commented that Millie's fatigue, coughing, throat
380593 - clearing, and breathing problems may be caused by blood clots that
380594 - have occurred in some patients treated with the Avastin Taxol drug
380595 - trial.  The doctor, also, discussed potential for cancer to have moved
380596 - into the lungs, which aligns with Doctor Laio's comments at Kaiser on
380597 - 040303. ref SDS 12 SO3F
380599 -  ..
380600 - During the meeting at Kaiser on 041005, the primary care physician
380601 - noted that CT tests do not show lung problems that explain chronic
380602 - cough, heavy chest, shortness of breath, and fatigue, ref SDS 22 OG3I,
380603 - and so the patient has nothing to worry about. ref SDS 22 OG5L
380605 -  ..
380606 - Doctor Benz concurred there may be nothing to worry about.  He said
380607 - mistakes are caused by the dynamics of complex biology at low levels
380608 - of detail.  Different situations can have similar initial
380609 - consequences, which lead to diagnosis mistakes.  Doctor Benz indicated
380610 - that cardiopulmonary problems are often not visible with typical
380611 - medical imaging, like CT tests.  If the analyst is looking for signs
380612 - of breast cancer, investigation of other problems, like lung and heart
380613 - disorders, might be overlooked, and so requires increased scrutiney in
380614 - order to avoid complications of compound issues.
380616 -  ..
380617 - The doctor feels correlation between Millie's rising symptoms of
380618 - pulmonary embolism for 6 months, concurrent with treating her cancer
380619 - using bevacizumab chemotherapy, which has published accounts of death
380620 - from pulmonary embolism, should be further investigated to avoid a
380621 - serious mistake.  He feels CT tests should be ordered with
380622 - instructions to look for pulmonary embolism.
380624 -  ..
380625 - Millie asked the doctor to include this issue in the 2nd opinion UCSF
380626 - publishes for follow up guidance at Kaiser.
380628 -      ..
380629 -     [On 041104 Kaiser reports blood clots found in CT test on 041028
380630 -     caused coughing and heavy chest conditions due to pulmonary emboli
380631 -     side effects of Avastin chemotherapy; patient removed from clincal
380632 -     trial, and all treatment was stopped. ref SDS 33 N43I
380634 -      ..
380635 -     [On 041117 2nd opinion received from Doctor Benz cites problem of
380636 -     persistant cough, heavy chest, and difficult breathing being
380637 -     investigated by Kaiser. ref SDS 34 OT5Q
380639 -      ..
380640 -     [On 050104 patient resumes treatment of IBC, condition worsens.
380641 -     ref SDS 40 0001
380643 -      ..
380644 -     [On 070510 UCSF maintains that until cardiopulmonary problems rise
380645 -     to visibility using CT tests without thin slice spiral CT
380646 -     technology, doctors and patients have nothing to worry about.
380647 -     ref SDS 53 KD84
380648 -
380649 -
380650 -
380652 -  ..
380653 - Avastin Protocol Randomized Phase III Trial as First-line Therapy
380654 -
380655 - The doctor asked about the Avastin protocol, which was submitted with
380656 - the record on 040517, citing the meeting at Kaiser when the Consent
380657 - form was signed, ref SDS 13 DK63, and provided to UCSF in the letter on
380658 - 041002 requesting a meeting. ref SDS 20 Y29R
380659 -
380660 -     [On 041018 Millie submitted this for UCSF records. ref SDS 31 L36Q
380661 -
380662 -
380663 -
380665 -  ..
380666 - Written Report Pending and Medical Records Returned
380667 -
380668 - The doctor advised he has not consulted the primary care physician,
380669 - nor with anyone from Kaiser on this case.
380671 -  ..
380672 - The doctor will dictate an opinion for distribution within a week or
380673 - so.
380674 -
380675 -     [On 041117 received 2nd opinion report from Doctor Benz at UCSF
380676 -     cancer center. ref SDS 34 6L9O
380678 -  ..
380679 - The doctor returned all of the films and pathology slides requested in
380680 - UCSF's letter on 041006, and delivered to UCSF this past Friday.
380681 - ref SDS 29 0184
380683 -  ..
380684 - The doctor seemed to indicate that imaging scan documents were not
380685 - reviewed, and none of the bloot test reports were examined, and would
380686 - not be needed to prepare his opinion, which reduced the work on 041014
380687 - to assemble the record into a training drill.
380689 -  ..
380690 - Consideration might therefore be made to save time and cost, and to
380691 - reduce aggravation expending efforts on assembling records, reported
380692 - on 041014, ref SDS 27 0001, which are not needed.  For example, a
380693 - doctor might make an initial review, then, if more is needed, request
380694 - specific scans and slides, rather than force a lot of people to expend
380695 - a lot of effort assemblng a lot of records that are simply handed back
380696 - to the patient unopened.  Maybe there is no good answer to this, but
380697 - it is clearly cost factor.
380698 -
380699 -     [On 041019 Doctor Guardino at Stanford reviewed all of the CT
380700 -     scans. ref SDS 32 ER8O
380702 -      ..
380703 -     [On 050826 applied experience from using medical records for the
380704 -     1st 2nd opinion to order a reduced set of medical records for the
380705 -     2nd opinion #2. ref SDS 45 668F
380707 -      ..
380708 -     [On 060725 applied experience today for another request that UCSF
380709 -     offer 2nd opinion, by providing patient history with links to
380710 -     relevant documents. ref SDS 46 QS4X
380712 -      ..
380713 -     [On 060821 for 3rd 2nd opinion submitted to UCSF very small number
380714 -     of documents in a "packet" assembled by
380715 -     Advice Nurse at Kaiser.
380716 -
380717 -
380718 -
380719 -
380720 -
380721 -
380722 -
380723 -
380724 -
3808 -